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Neglected Tropical Diseases

North American Cysticercosis Consortium

The North American Cysticercosis Consortium was formed in 2009 to promote collaboration and sharing of resources in the study of neurocysticercosis among clinicians and research scientists in North America.

Neurocysticercosis, infection with the larval stage of the intestinal tapeworm Taenia solium, is prevalent in many areas of the world where pig raising is common. It is the most common cause of adult-acquired seizures in endemic regions and is responsible for about a third of all cases of seizures and epilepsy worldwide. These are due to degenerating viable cysts or calcifications with and without perilesional edema. Normal or abnormally proliferating cysts that lodge in the subarachnoid spaces or ventricles is the most serious form of the disease and frequently results in hydrocephalus, infarcts, and mass effects.

People become infected following accidental ingestion of ova released from an infectious intestinal-dwelling tapeworm, which in turn develop after ingestion of pork containing viable cysts. An estimated 1,500 cases of neurocysticercosis are diagnosed each year in the United States. As the life cycle is not present in the United States, most infected people are immigrants, primarily from Central and South America, and to a lesser extent, from Haiti, India, and Korea.

Cysticercosis rivals malaria as the most common morbid infection seen in the United States, yet few resources have been devoted to its study and treatment. Even in regions where relatively large numbers of patients are seen, with a few exceptions no clinic or person is devoted to their care. This not only leads to poor care and follow-up but also to a lack of expertise and randomized studies to understand how to treat and care for these patients.

The North American Cysticercosis Consortium is a working group of physicians and scientists interested in furthering the study and rational treatment of neurocysticercosis in North America. The establishment of this consortium is supported by the National Institutes of Health Office of Rare Diseases and NIAID, with an overarching goal of determining the feasibility of conducting collaborative, multicenter studies of neurocysticercosis and to pool the experience of practitioners in North America who are involved in the management of this disease.

Members of this consortium are a select group of infectious disease physicians, neurologists, and scientists who have a strong interest in neurocysticercosis. The participants’ interests and expertise attract a variety of patients with complex and difficult-to-treat disease, which mostly consists of subarachnoid neurocysticercosis. This is not only the most severe and morbid manifestation but also is the form of disease that is least studied. There are no randomized treatment trials, and it is unclear how treatments in the few reported series of subarachnoid cysticercosis apply to most patients. There was general agreement that study of subarachnoid disease is worthwhile and had potential to yield new information. Researchers initiated a retrospective review of subarachnoid disease and related studies.

There are a number of advantages to studying neurocysticercosis in North America. First, it enables the application of sophisticated imaging and testing to a third world disease. Second, there is little or no transmission, which eliminates the possibility of re-infection. Third, patients can be followed for long periods of time, particularly if medically required. Last, the pooling of resources and patients permits a large, collected experience and subsequent robust comparisons and analyses. A group caring for enough patients can develop common protocols, use common resources and testing, and apply for grants and support.